Isla & Aaron's Story
Aaron and Isla’s special connection
Aaron and Isla Gilby share a unique bond.
Both siblings are profoundly deaf and have cochlear implants, thus sending them on a special journey that only a select group of people can relate to.
Aaron, the second child of Shona and Michael’s four children, was born in England and failed two hearing tests.
"We were very worried, but I was clinging to the hope that it was just glue ear," Shona says.
Shona and Mike tried desperately to get Aaron, now 10 years old, to respond to loud noises by clapping and banging doors, to no avail.
The diagnosis that Aaron was profoundly deaf in one ear, and had severe hearing loss in the other, left the couple totally devastated.
"It came out of nowhere and we had no idea what caused it. Trying to keep hearing aids on a 10-week-old baby is next to impossible," recalls Shona.
“Aaron being born deaf was totally unexpected and I really had no idea of what to expect and what he might be able to achieve.”
The family moved to New Zealand when Aaron was four months old and when doctors later discovered that Aaron was profoundly deaf in both ears, it was recommended that he be fitted with cochlear implants. Six months later, it was done.
“We were introduced to The Hearing House when Aaron was 4 months old at a time when deafness was completely new to me.”
He has now had his implants for more than eight years.
When Shona became pregnant with Isla, the couple knew there was a chance she would also be born deaf.
One of the first stops the family made after their daughter's birth was to The Hearing House to get baby Isla's hearing tested immediately. The family discovered that their new addition was profoundly deaf in both ears.
Isla, now 8 years old, received bilateral cochlear implants in April 2009 when she was 5 months old – and at that point, she was the youngest child to receive the devices through The Hearing House programme.
The siblings’ oldest brother Lewis and youngest brother Harris are both hearing children. Genetic testing has revealed that the Connexin 26 gene mutation is the likely cause of Aaron and Isla’s hearing loss.
Shona says one of the many good things that have come from Aaron and Isla being deaf is that they each have someone in the family that they can relate to.
"All the children have a really good relationship but Isla and Aaron are especially close.”
She says when they were younger they did a lot of their therapy together.
“He understood her devices - if they came off he tried to put them back on her."
The children attend Greenhithe Primary School and are both doing exceptionally well in all areas of school.
They enjoy sports, music, and playing with their friends at school with only minor setbacks.
"When people speak really quietly it's hard to hear them if there's lots of racket in the background," Aaron says.
"Sometimes when I'm running in netball I can't hear the umpire," Isla says.
Shona says the family is “enormously grateful” to The Hearing House.
“From our very first visit to The Hearing House, it was apparent that we were surrounded by people who wanted the very best outcome for Aaron and Isla and they were able to show me how that could be achieved.”
Shona says it was a proud moment when each child turned 5 and started mainstream school with a language age that was equivalent, if not greater than, their hearing peers.
“I never believed my children would be speaking so naturally. If you could not see their cochlear implants you would have no idea that they are deaf. In fact, they speak so well that some people find it hard to believe they are profoundly deaf.”
In recognition of their success, the pair were invited to represent New Zealand at the annual Power of Speech Awards on May 17, 2017.
Every year, children with cochlear implants from New Zealand and Australia gather to challenge common perceptions around what children who are deaf can achieve.
The public speaking event is held at Australian Parliament House in Canberra and sees children give a three-minute speech on a topic of their choice to an audience of parliamentarians, distinguished guests, families and friends.
Aaron says his speech was about the misconceptions people have about cochlear implants “and the crazy questions people have asked me”.
“My family helped me practise my speech by giving me advice. Finally, the day came for the speech. I was so nervous! When it was my turn, in my head I was screaming ‘deep breath here we go’.
“I was so happy when I finished because it was one of the scariest things I had ever done!
“I think I did a great job and I would love to do it again.”
Isla says it “felt amazing” to be selected to take part, but she was incredibly nervous.
“It took me about two weeks to write my speech. I had encouragement from my family and some help. My speech was about my favourite hobby, Cubs, which I do every Thursday night.”
Isla says one of the highlights of the event was being around so many kids with cochlear implants.
“When I walked into Parliament my stomach was so full of butterflies that I thought my stomach was going to burst. It was a lot of fun in the end. It was an amazing day and I will never forget it.”